I just recently found this discussion forum and would like to share my story and worries. Also hope to learn from your experiences to find the best possible options for my 22 months old son.

My son was diagnosed with Vascular Malformation on the middle finger of right hand. It came with birth, but only a tiny bluish dot (size of needle tip) on the tip of his middle finger. At about six months old, the bluish coloration started to expend to the entire upper middle finger (front side). At about 12 months old, the bluish area expended to almost the entire middle finger (front side). Also, at this time, we started noticing the middle finger grow fatter than other figures, not dramatically fatter, but noticeably fatter. Recently (in the past month, age of 20 months), we noticed the bluish area expanded to the index finger and palm. Also, the index finger seems to grow fatter and the top of palm seems a little puff. At this point, we have not noticed functional abnormality yet. The malformation generally does not bother him much, not much pain I guess. Occasionally, I can tell he is in discomfort because he would not let me rub his finger or wash his right hand. This happened a couple of times.

We visited a local vascular malformation center a couple of month ago. With MRI result, my son was diagnosed with Lymphatic Vascular Malformation (mixed type). But, they suggested no procedure to be done at this point. They will monitor (visit the hospital every few months if no rapid change occur during these months) and let me know when it is time for a procedure to be done.

Well, I am a little concerned now and worry if delaying possible treatment at this stage would cause the affected area to grow bigger which could be more difficult to deal with in the future. Especially, we have seen changes in recent months. I worry it will expend to the entire hand or even to the arm if leave it untreated. I'm not sure what to do at this point. Shoud I wait like what the local hospital suggeted. Does any one have similar case? How worse it could go, entire hand, arm, even expend to the body?

I am also seeking another specialty group for a second opnion. Does any one have references regardelss the location? Thank you for reading the message and thank you in advance for any information you may offer!!!

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